ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: patt on July 10, 2011, 06:12:28 pm
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Hi Everyone ----
Well, it has been a year now and I am disappointed. I was treated 1 year ago with "FSR" on a 3cm acoustic neuroma. Things were going well until this last Feb, when I started to have echoing in that ear. Dr did another MRI and the results did not change -- that is --- I only have had a 3 mm decrease of my 3 cm tumor.
Just in June of this year, I lost most of my hearing in my tumor ear. What makes it so bad is that -- I have limited hearing in my other ear. What do I hear? NOT much --- now you know why I am disappointed.
I still have some echoing in that ear --- I can hear my breathing, talking and my heartbeat -- not fun. Dr thinks that I have some scaring around the area --- maybe the eustachian tube. Now he has me on some medication to bring down the scar tissue --- if it works, it could take months. Not a fun situation. I didn't have any trouble with the Radiation at all, but now I feel worse than I did last year. I really don't think he understands. NO one does that hasn't had this AN. I wouldn't wish it on my worse enemy.
Sorry for the complaining --- just have to vent!!!!
Would love to hear from you --- have any of you experienced this problem?
Thanks for listening ---- Patt from Minnesota
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Pat
First of all we all need to vent at one time or another, that is very natural. I am sorry you have not had the best outcome with radiation. I had cybercafe done last November and have also lost some hearing. The doctor warned me that might happen. I also have lost hearing in the other ear so they were very concerned about it. I don't know if you have them but hearing aids really help me.
Sounds like the tumor is not growing which is a good thing, hopefully the AN will continue to shrink and you will get some relief on the hearing issues. The doctor told me that is could take up to 18 months to see changes so again hopefully yours will come.
Best of Luck
TJ
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Patt ~
With diminished hearing now in both ears, I think you have good reason to be frustrated and upset.
I underwent 26 FSR treatments (on a debulked AN) but had already lost all hearing my 'AN ear' prior to diagnosis so hearing loss was never an issue. My 'good' ear was not affected by the FSR and remains quite functional. I'm terribly sorry to learn that you're struggling with this problem and I hope the medication is successful for you. Meanwhile, never give up hope.
Jim
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i had ck - not fsr
i wore a hearing aid in the ck ear for a few years.
after Ck, i lost most of the usable hearing in the ck ear.
The non ck ear - is not good.
audiologist
#1 fitted aid while with ENT. no need to test for why hearing loss in one ear.
#1 formed own aid practice. She did not question 1 sided loss again.
#1 took extended vacation
aid broke
to #2 - she helped to find AN and fixed the aid.
#2 no longer works on my brannd of aids.
#3 went to her after loosing hearing in AN side. she moved aid to non AN side and said that is all that she can do.
I went back to #1 as she fit an aid much better that all the. i got past the history.
now i wear an aid in each ear. she fit me with an aid that helps on AN ear.
i have improved at lip reading. #1 audiologist has tested hearing / understanding with her face hidden and with me allowed to see her mouth and expression.
you learn to say - i am hearing impaired.
you ask people to repeat.
i ask my wife to interact with others for me ....
you learn to stay out of some places such as noisey eateries.
i use emails over phones (blackberry). i searched for the best speaker phone.
the only thing that i have not been good at is - i do not go to parties - social things as often. I have to work on this!!!! I am considering joining a faternal group to force this??????
the bottom line is that you will learn to adapt --- you will need to work at it. but you will adapt. so start working at it.
have you tried an audiologist?????
carter
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Hi again to all of you -----
Just got a phone call from my Radiation Oncologist. He is sending me to the "UofM" in Minneapolis Minnesota to see Dr. Samuel C Levine --- he is in the Otology/Neurotology Department. I am really happy! Hopefully I will get some answers to why all of this is happening to me now. I will keep you posted.
Have any of you heard of him??
Patt from Minnesota
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Have not heard of him. I'm from the Chicago area, and my FSR was done about 10 years ago in NYC, by Dr. Gil Lederman, who was the leading FSR practitioner at that time. I did lose hearing in my tumor left ear, and he told me that position of the tumor might affect any hearing loss or retention. He had the most experience, and I went to him, figuring that most other physicians at THAT time would have limited experience, which now has changed. Fractionated Stereotactic Radiation has advanced quite a bit since 2002, so you would be in good hands regardless, but thank GOD for the internet which gave me the portal to learn all about AN, and who was who in this treatment field.